@arty1 thats brilliant cardiology news. Happy lovely wreath making and hope things will come together for your daughter.
3 Likes
Ohh thatās great. If you feel comfortable post them here I am on awe of anyone who learns new things!
2 Likes
Well done! So hard to do but I am glad youāre reaping the rewards x
2 Likes
Evening everyone.
Iām trying to catch up on all the posts! It seems there are lots going on but glad to hear youāre all okay.
I saw my surgeon last week who confirmed PCR, although my oncologist had already told me. However, I did learn that I had 10mm of DCIS. The surgeon also said my post surgery stage was 1 and said it hasnāt changed from diagnosis. This makes no sense though as the original tumor was 24mm according to scans and they said that was stage 2 in all my correspondence. The only thing I can think of is that the DCIS made up some of that measurement and has taken a cm off of the invasive size meaning it was stage 1. I should have asked him to clarify but only thought of it after as I was too busy focussing on his advice to ālive like your cured.
So the n CT part of my journey:
I have 5 doses of radiation between Christmas and New Year booked and I start Tamoxifen in Jan but I forgot to ask how long Iāll be on it. Im still wondering whether they should be suppressing my ovaries but the oncologist doesnāt think the side effects outweigh the risk. Iāve started herceptin injections I donāt know why, but I feel nervous only being on herceptin. If it was phesgo that helped me achieve PCR it makes sense, in my mind anyways, to keep with the winning formula, but the oncologist said they have protocols to follow if a patient had PCR.
Iāve asked again about genetic testing again, but the surgeon says Iāll have to pay for it privately. He also doesnāt recommend 9 years of annual mammograms, due to radiation. He said annually up to 5 years is fine and then drop down. Between the mammograms, herceptin only, and no ovary suppression im starting to query whether this is just cost savings. I donāt want to be over treated but under treating me is terrifying.
I have so many questions now but It feels like theyāre getting ready to release me from their care and wondering who I ask.
On a happier note: I noticed that non alcoholic mulled wine has come up in topic quite a lotā¦my advice is to try the Aldi version..itās delicious.
3 Likes
Hi @cass2 I do understand your worries and I think we all struggle to process what weāre being told during appointments in order to formulate our questions. If theyāre maybe looking to discharge you soon check if you still have access to the hospitalās breast care nursing team. Also donāt forget the bcn nurses on here. I think many of us worry about treatment being cost related rather than whatās best for us, but they are NICE protocol guided so you could always check those guidelines. I canāt help wondering in the same vein about whether because Im in the granny category they might not bother! However I ask lots of questions especially of something changes. Sounds like we might be doing a toast to this thread on Christmas eve or thereabouts, with or without the alcohol content depending where weāre all at.
4 Likes
Great news about your EF. I agree with you on the masks. I had my last chemo 2 years ago today and like you I wore N95/FFP2 masks everywhere as my treatment was during autumn winter and your immunity is still lowered on Herceptin/Phesgo. I continued for a a couple of months after finishing Herceptin especially in busy, poorly ventilated places or if I was in a GP/hospital setting.
This year I have only worn at the GP as you donāt know why people are there and they donāt open windows, a few weeks ago I waited nearly an hour and people were coughing so I was pleased I was masked. I have probably caught my chest infection from just being out and about in the community. Iām also on Exemestane which can increase you risk of infection.
@cass2 great news. Most Aldi non alcoholic drinks are ok. Iāve tried most apart from 0% cider, not my thing. Makes you feel like youāre having a drink in a nice glass but without the associated risks. I hate the smell of alcohol now, my last drink of red wine was first week of chemo, I was told one would be ok, but it tasted horrible. To be honest my liver was working had enough with the drugs without dealing with alcohol.
2 Likes
@cass2 hi, just to say I had pcr too and was told I could only have Herceptin, not Phesgo for the remaining treatment. I felt exactly as you do, wonder if itās cost related or not! In the end I was offered a trial which means I have stopped all injections as they are trying to prove 9 injections have a very similar 5 year result as 18. I worry, but I was concerned about risk of further heart damage as my treatment has already given me AF. Hope all goes well for you, I start my 5 days of Radiotherapy tomorrowā¦..
3 Likes
Great news @sassy3
It may not be just cost it could be over treating you with Phesgo which is Perjeta and Herceptin combined. As you had a PCR you have responded well and they believe Herceptin is the best option to continue. All treatments are individualised, depending on the size and grade of tumour. Some of us have combined chemo others a single one. They adapt to you.
Good luck with radiotherapy, it can be cold in the room, I cut the end of some long socks to wear on my arms as from waist up I was bare. It helped to keep me a bit warmer. I also had 5 days at higher dose, compared to 15 days slightly lower dose, and the fatigue kicked in quicker than I was told. I had three days, weekend break, then two more days. I was shattered by the Monday and needed a lift to my appointment.
1 Like
It does appear to be the case with PCR that Herceptin is given. In my case I wonāt be having it anyway due to the trial. Just had 1st radiotherapy all fine, 4 more then done 
2 Likes
Hello-hello!
Iāve been away in Saltburn and had the best time at the Beamish Living Museum. It was utterly enchanting. Favourite bit had to be the Victorian Street all done out for Christmas and Santa and Mrs Claus sitting there in a horse drawn carriage.
@arty1 Yet again you prove to us just why your forum name is so perfect for you. You are so gifted. I wish I had that gene. Thatās fantastic news that your heart has recovered so well. @mrsjelly Pottery has been an ambition of mine for my whole life. When I was a kid I asked for a pottery wheel for a Christmas present but it didnāt work so back it went to the toy shop in Croydon and they had none left to swap so I got a chemistry set which turned out to be a major disappointment in comparison. To this day, Iāve still never managed to have a go on one. LOL that your kids have āagreed to have a spoon restā!! 
@naughty_boob Get well soon, lovely one. I didnāt know we were at higher risk of blood clots. Another nice gift from bc. 
@cass2 Thanks for the tip on the non-alcoholic ALDI mulled wine. I have an ALDI that has opened up next door to my office and you canāt keep me out of the place! I know what you mean about the worry that treatment is cost-related but your treatment path is not unknown. Others on here have been moved from Phesgo to Herceptin only after PCR.
Hope you sail through the radiotherapy @sassy3
5 Likes
Hello my lovely people. I have been catching up on all your posts and news of your well being through these posts for the past two days. It feels so good to read that so many of us have had happy news. Some have faced challenges but I am here to tell you, that if does get better and you will get through it. My thoughts and prayers are with every single one of you and I have faith in the universe making things better as we get ahead. I have been offline for a couple of weeks as I was focussing on my mental well being having suffered a major mental breakdown a couple of months back. My partner is finally getting to the end of her Kadcyla treatment and cycle number 14 goes in tomorrow. She finally made it through!! We both are a mixed bag of emotions and donāt know what to do with ourselves anymore. I just thought I had to share this news with this lovely group here and to let anyone going through Kadcyla that you will make it through! Just hang in there. I am still processing on how and what I feel, but I will be back on this thread soon to be able to share my feedback, feelings, tips, information or anything else that can help someone get through. This group has been my anchor of support with so much love and kindness that I do not even have words to describe the depth of my gratitude. Sending you all a big warm hug 
9 Likes
@sms great to hear from you, both take care.
4 Likes
Hi @sassy3 Iām interested in knowing about the Persephone 9 Herceptin treatments as opposed to 18. Did you get offered the trial and was that recently? Iāve had surgery in April for a 1.2mm grade 2 HER2+ IDC clear margins no lymph node involvement. 6 x carboplatin/docetaxel/herceptin via PICC and now 2 x herceptin as subcutaneous injection. Iāve had 5 x radiotherapy. Before I go for number 9 I was considering asking if I could be considered for 9. Is the trial complete now as there is an article in the Lancet journal. Thanks 
2 Likes
Hi, I think the trial you speak of was a previous one. The trial I am now on is a similar thing, it is the HER2 Radical trial, it is for Phesgo not Herceptin. I think the criteria is PCR and only having had 9 Phesgo injections. I think the trial is still on offer to suitable candidates, it might be worth asking. Sorry I canāt be of more help, good luck, hope all goes well for you
3 Likes
Ah sorry didnāt realise it was for phesgo. I will speak to my oncology team. Thanks anyway x
3 Likes
Great to hear your news and that your partner has got to the end of her treatment.
3 Likes
@sms Woohoo! 
happy to hear that sheās made it to the end of Kadcyla. Youāve both been through the wringer there.. 
After such a long course of treatment, thereās a lot of what do I do now? I know I was happy to be done but at the same time it felt like my safety blanket had been ripped away. Sending love to you both..
4 Likes
Just saw this news about the HER2+ vaccine: Greenwich LifeSciences Announces Preliminary Analysis Showing 80% Recurrence Rate Reduction in the Open Label Arm of FLAMINGO-01 | Greenwich LifeSciences, Inc. (GLSI) | GP2
5 Likes
Very promising for those with residual disease (Kadcyla).
3 Likes
That, @sms is a very happy and lovely post. Itās also very encouraging for those who are struggling. I am so sorry to hear that you had a mental breakdown as a result of it all. Itās like some form of PTSD and I often think how traumatic it is for the partners of those of us going through cancer. You have been there 100% for your partner and now you have reached the end of treatment, you must continue to focus on the mental recovery from it all. Sometimes something will remind us of this time 2 years ago and my husband and I will reminisce a bit but not for long. We have all been through a super stressful experience and it needs processing, in whatever way helps us to make sense of it all. Please do continue to share what helps you both to move forward from here. Itās really heartwarming to know that this group helped you both through. Itās a fact that itās full of incredible women and I feel the same about it as you do. Big hug back to you both.
@kartoffel This is very good news!!
4 Likes